Saturday, February 29, 2020

5 Books

Lately, E has struggled to find interesting and appealing books at school. So, I made a list of books that I thought would appeal to him and had him start to read them. So far, in the last two weeks, he has devoured several that he loves, and has started into branch out and get excited about reading different books that I recommend to him. It does tend to be harder to find books he will enjoy that are both complex enough for him and age appropriate. Here are 5 of his favorites from this week:

1. Inside Out and Back Again by Thanhha Lai.
2. My Side of the Mountain by Jean Craishead George
3. Call it Courage by Armstrong Sperry
4. Dragonwatch by Brandon Mull
5. Mr. Revere and I by Robert Lawson*

I had to asterisk "Mr. Revere and I" because Eli was enjoying it...but he misplaced the book while reading at my grandmother's house and we haven't been able to find our copy. I will be getting another copy from the library for him to finish the last few chapters.

E is also loving the Black Stallion series, the Wings of Fire graphic novels, and the Bad Guys books (which he reads over and over). As he continues on this reading jag, I will try to continue to post what he's reading. In the meantime, I am open to book suggestions for him!

Tuesday, December 24, 2019

Good Week

Well, after all that I posted last week, the terribly naughty things the boys have been up to, we actually had a really great week this week, all around. Not to say that everything was perfect, but I got to be a proud mama.

E, especially, worked really hard. He was asked to play piano during church, and worked really hard to memorize Greensleeeves just for the occasion. He did a beautiful job. Since most people couldn't see him, it was a surprise to see a tiny kid come out from behind the piano after playing so well. Later that week, E nailed a community presentation about animal behavior and adaptation that was a requirement of the gifted program he attends each week (they have to do formal presentations in the evening at least 4 times per year, starting in 3rd grade). He'd worked extremely hard on his presentation and I was really proud of the hard work he'd put into it. 

M worked really hard this week, too. Because we are near Christmas, his class tried to get up a little performance of some Christmas carols. M learned quite a few songs in a very short amount of time. Apparently, even after learning all the songs, he was too intimidated to sing when the time came, but I'm proud of him for learning them so well. He did the same at church. He and E were some of the wise men in our church's children's Christmas pageant, and they learned six new songs (all of which had 3+ verses and a chorus). M learned all of the songs....including one where he was to sing as part of a trio. And, for the most part, his diction was pretty good - understandable more than 50% of the time. This is incredible, given that he struggles so much with speech that he still sees two therapists every week. I'm proud that he was able to learn so much in a short time, even though he was too overwhelmed when the time came to actually sing in church. In fact, though, he wasn't the only one....the trio that was supposed to happen ended up being a solo that E carried through by himself, since the third boy also froze when the time came. I'm also glad that M was proud of his hard work; I think this is a huge step in the right direction.

Monday, December 9, 2019

In Other News

My mom has been after me to write down more of what's been happening lately...because the boys are off the chain!

One of them attempted to go the pre-school toilet (M).

One child gets near-daily trips to the director's office for screaming at his teacher or rolling in the floor and refusing to participate. (M)

One hid his glasses on the playground, refusing to tell where they were, and it took the teacher and the assistant 40 minutes to find them. (M)

One pulled the fire alarm at school, resulting in the evacuation of the school in the cold and rain (it was 41 degrees). (M)

One got frustrated in class when dropping an item and responded with "Aw, Hell" (M).

One of them has had some issues with 2 girls on the gifted center bus and got hauled into the assistant principals office for moving/walking while the bus was moving because he was refusing to sit with them.(E)

 One decided to inform the bus driver that "if she'd keep her eyes on the road like she's supposed too, then she wouldn't be up in the kids' business." (E).

One had punched someone in the head in class because the other kid turned off his laptop while he was wprking on a project. (E).

One was calm and polite as he can be and totally honest about why he hit the other child in the head. (E)

One cut a hole in another child's sweater on a dare with scissors...while the teacher was teaching. (E)

One refused to sit an assigned seat, plugged his ears and turned his back on the teacher when she tried to talk to him about it. (E)

While this does sound pretty bad, I must also say that this doesn't represent most's just been a rough autumn. Most of the time, our boys are kind, caring and thoughtful....and a lot of M's missteps are because he is a rambunctious 4 year old (he's actually a lot calmer than E ever was at 4).  Because of his delays, M is also a lot more prone to becoming frustrated and freaking out because of his frustration level. Even still, they have both come SO FAR. E has actually had the best school year (so far) he's ever had, for many reasons. We are grateful for a great 3rd grade teacher, the research projects that he's been able to participate in, and the new academic clubs he's able to be a part of, and his increased involvement at church. He's becoming a lot more introspective...and since we have removed all weekday (Mon-Thurs) electronics, both boys seems to be a lot happier and well adjusted. M, too, continues to make enormous gains. I'd predicted long ago that he'd be caught up to his peers by age 5. While he might not catch up in all areas by that time, he's so close that most people don't realize that he's a little behind here and there. I wish I had more time to sit down with him and work on therapy excercises and academics than I do, because I think it would help. Still, his speech is changing dramatically for the better (he's still about a year behind in expressive language), and it's a relief to have simple conversations with him now. 

Here's hoping winter is a bit less bumpy than fall!

Tuesday, November 12, 2019

Special Ed Frustration

I really did think that, since the hubby and I are both familiar with the ins and outs of the education world, that we would have an easier time understanding and fully partcipating (calmly) as parents in the labyrinth that is special education. I was picturing Norman Rockwell style IEP meetings, folks. Everybody is kind and agrees on everything, and my child is making beautiful progress at each venture... what a lovely daydream.

I hate that I was wrong.

I am now being forced back into the role of "really annoying parent who sends long emails" when I'm simply trying to advocate for my child. It was taken for granted by certain people that I would just lay low and not make waves since I work in-district. It's very frustrating to run up against an individual or two that want a child to completely fail before offering any accommodations in the classroom....especially when said child has documented neurological, orthopedic, and vision disorders, has distinct and simple needs that can be easily met in the classrom, and sees a literal team of physicians that have made recommendations to help.

I'm very thankful that, after another meeting, his IEP is - at least theoretically - being revised to include the support M will need for vision and other CP- related concerns, in addition to the speech services he already receives. I've been awaiting the "final copy" for about 3 weeks.  Here's to hoping the rest of this process is smoother sailing!

Thursday, September 26, 2019

M is FOUR!

I can't believe it...but, like the title says, M has turned 4!!  A few months ago!!  And I'm just now posting this!!

He is communicating so much better and his personality really shines through on good days. His 3 year old year was VERY rough, as a mixture of "threenager" behavior and lack of communication ability led to SO MANY intense tantrums that I had more than a few chats with his pediatrician and therapists. We are actually wondering if he's showing some very early signs of anxiety/OCD/sensory issues as a good many of his tantrums are about teeny specs of dirt, a single cat hair on his hand after petting the cat (he prefers to lay his face on her instead of getting his hands "hairy" petting her), details that "don't look right" (such as a small hole in a plastic table cloth at a consignment sale that upset him so badly, that he couldn't stop looking/talking/thinking about it for literal hours) and unusually intense fixations on objects (such as a doorstop at his speech therapist's office that upsets him EVERY WEEK because it's bolted to the floor and cannot be moved). Having already been through a lot of this with E, it's weird to see it in reruns with M.  I know sensory issues are common in kids with CP, though, and at least we know where and how to start helping him.

One thing I must say is that we were really blessed last year when we moved him to the new preschool. M had a great teacher in the 3 year old room of the preschool we moved to; she worked really hard to help him and we saw lots improvement in his self-help skills, speech, and play. At this point, we are all seeing him make great progress in each and every direction, so fingers are crossed that he continues!  We kept him at the same location for his 4 year old/pre-k year, though he has a new teacher. She is very young and inexperienced, though, and while she means well, she has a lot to learn about working with really little kids...especially kids who have delays, like M.  Still, she is really trying to help him, and I think he's making great progress, partially because she has very high expectations for him. Although the tantruming behavior was initially worse at the beginning of the year, M's tantrums are decreasing dramatically in frequency and intensity (though he is still very capable of a colossal meltdown every so often - as he did at school yesterday, when he began screaming, kicked his teacher and knocked over two low bookshelves).  He even has the claim-to-fame that he has had more "happy face" days in the first two months than E had his entire preschool year.

M's decreasing tantrums are definitely a direct result of his increased ability to communicate. He has begun speaking in some sentences, can tell some simple stories, and repeats a lot of what we say. He can REALLY sing, and memorizes the tunes to songs easily (though the words take him quite a lot longer), and kids' choir at church has been a great outlet for him (when he decides to participate instead of running in circles around the room). He adores trucks, cars, trailers, tractors, and everything else on wheels.  He also loves, loves, loves all animals...cats, dogs, horses, chickens, etc.  Did I mention he LOVES our chickens??  He reminds me quite a lot of the Tiny Toons character Elmyra...

And though this post is very belated, I did want to add that we had a great time on M's actual birthday. He got to pick what we did, and he wanted to visit the fire station and eat pizza.  So, we took him to the local firehouse to see a real fire truck up close, and he had a BLAST. I *might* have told him that the real fire truck was "his" but that it has to live at the firehouse so that it can go to work and help people. We've actually seen the same truck around town a few times, including once at our church, when a repairman accidentally set off the fire alarm one evening. M was thrilled because he got to see "his" truck at church and touch it/sit inside it again and talk to the firemen.

Soon, I will be posting some more about milestones he's reached (he's come SO. FAR.) and what's going on in our lives now, but I have at least six posts that I drafted and never published, so I want to get them out first!

Tuesday, May 21, 2019

M Wants to Swim on a League

M started swimming with me as an infant, at our local YMCA. We didn't participate in any classes, as M wasn't capable of benefiting from the "Baby & Me" groups at the time. We focused on getting him used to the sensation of the water and enjoying it. The following year,  we got a swim teacher to work with M one-on-one for a couple of months, to help M begin to loosen up and move in the water - it worked incredibly well, even though the teacher had little knowledge of CP, and the swim sessions really helped M make a lot of progress in physical therapy AND in speech. During the same summer, I began working with M at our local Y again, this time teaching him to walk through the water on the stairs,  float on his back, and splash around. When M turned 3, we had the same coach work with him again, teaching him to kick with his legs and blow bubbles with his face in the water.  I asked her to continue with him in the indoor pool  in the fall, but she had decided to quit teaching lessons at that point to pursue a college degree.  So, after a short time debating about WHAT to do, I decided to be the one to try to teach him the rest of the skills he needed to swim.  I'd originally tried to avoid this scenario, as I had been the primary person to make him complete his therapy exercises, and he already had a hard time taking instruction from me because of it. He would often get angry and frustrated with me, and often try to refuse to do the exercises that he needed to do, because they are hard for him.  But as he has gained skills, and his therapies have decreased (and he's realizing that we are trying to HELP him - not get on his nerves!), things have gotten a lot better.

Never in my wildest dreams could I have pictured how successful this would be, especially after the complete failure of our first lesson (which initially began with M stiffening into a human 2 x 4, clinging to my skin with his fingernails, and refusing to follow directions...and went downhill from there).  I knew it would be hard. Even though M had lessons previously, and he had been learning to kick his legs and blow bubbles, he had be out of the water for 6 months and it was like starting over.  We started back in the middle of February, and our first lesson together was absolutely an unmitigated disaster.  We almost didn't try again - I was absolutely, all-too-willing to throw in the proverbial towel and let someone else take over or wait until M was older.  P eventually talked me into trying again (mostly because we know how good the water has been for helping him relax his muscles - something very hard for a child with spastic CP to do).  I committed to trying for a solid week of at least 3 lessons.  If after that, things were still going so poorly, and we weren't making any progress, we would quit.

From then on, I made it a point to have only M and I go to the pool, so he would have to give me his undivided attention. At first, we worked on kicking (with me dutifully dragging him to and fro). We worked on arm stretches to help his tight shoulders. I brought toys for him to chase (with me supporting him) and made sure his goggles fit just right without fogging up. We used a swim device on his torso to give him a little bit of support as he was learning, so that he could swim a little bit without holding on to me. We practiced having him float on his back. We began making very slow, incremental progress, interrupted by days where M just didn't want to cooperate (even though he would beg to swim). I tried bribery (somewhat effectively). Slowly, M gained a few skills here and there, but still had zero confidence.

Then I found a YouTube channel that changed everything. I followed this teacher through many of his videos of teaching kids to swim...and much of what he said seemed like it would work for M. I actually had M sit down and watch with me a few times, which ended up being VERY helpful, as he could see what I was trying to help him do, just a piece at a time.

Suddenly, about a month after we started, M began accomplishing swim skills at an amazing pace. It sometimes took a while to help him troubleshoot how to use his body or move certain ways, but what we were doing was clearly working.  And then, all of a sudden, he was swimming a little on his own...just a few feet to the side of the pool.  With the addition of fins (to help him straighten his legs), he began to do even more, even when the fins were off.  Swimming under the water and retrieving toys under the water became his favorite things to do, and he began learning how to take a "pop up" breath on his own.  Other parents began stopping me at the pool and asking me to teach their kids how to swim ( thank you!).

Since M had been working hard to learn to swim - and has gotten to a point that it's not just good for him, but that he actually LOVES it, we began toying with the idea of letting him swim on a summer league. We initially had a goal of allowing him to try out for year-round team in September, when fewer small children swim and he'd get more individual attention. But at this point, he definitely swims as well  as E did when E joined the swim team, so he has the skills to do well and enjoy it.  In addition, and perhaps our biggest reason for thinking of summer league, was that M has been getting very jealous of E, especially since he knows that E gets to swim at practice with other kids, and that E gets to swim at meets. At last month's swim meet, for example, M threw a record six tantrums over E getting to swim - all the time screaming and sobbing "I BIG BOY! I SWIM TOO!"  It's actually to the point that we actively try to NOT take M to meets, just to avoid his meltdowns - but it means that P or I ends up having to miss E swim, which isn't really fair to him.

I was talking to another parent over M's wails at one of E's recent meets, and she suggested letting him try out for a smaller team nearby that I hadn't known about. This team has more young kids and takes a different approach to working with them. She was about to give me details, when one of E's coaches broke into the conversation (I hadn't known she was near), and was insistent on M trying out for summer team for her.  I explained to her that the reason I hadn't wanted to do that was a fear of M getting hurt, due to his size and disability. The coach brushed it my concerns and encouraged me to let him try anyway, reminding me that plenty of little kids swim and that she knew she could keep him safe.  So...I agreed. Tryouts are individual, and the "evaluation" is simple, even by M's standards. Knowing that he could do what they would ask, I took him for tryouts, which consisted of an almost 90 minute long parent meeting and less than 3 minutes of each kid actually being in the water (and only 3 kids were trying out that day).

Let me stop and say M did an AMAZING job!

We are very proud of our little boy - he jumped immediately into the water at his turn and swam directly to the coach. This coach was the same one who'd worked with M as a young toddler, and was shocked at how well he did. She turned him around and he swam back to the pool side; and he repeated this two more times, each time better than before.  I told her (and him!) I was very proud of him.  In fact (and she agreed), M actually swam the best of the three kids who were present for tryouts. However, he was rejected for the team -  for the exact same reasons that I gave the other coach that he wasn't ready for team. He's young and small (still 3!) and would be at risk for being grabbed, dunked, bumped, etc by much larger 5, 6 and 7 year old kids who are also fairly inexperienced swimmers.  If he had been 2 years older/bigger, they would have accepted him onto the team with no issue. The coaches on this team do not get into the water at all when the kids are in - and it would be all too easy with so many kids in one lane for him to get stranded in the middle of the lane past the point of his stamina to swim/tread water. I agreed with her reasoning completely, and re-explained that this was why I was looking into a team that catered to younger kids.  I questioned the other coach on why she'd encouraged us to try out, but didn't get a real answer.

Later, I did call my friend and got the info for the smaller team. It is a team that handles their coaching of small children in a much more developmentally friendly way, so it is a better fit for M. I've expressed to the coaches that I don't care if M swims at a meet or not, that all I want for M is for him to build his confidence, feel like he's capable and that he can contribute and be part of a team.  His first practice with them went well (although he's really not good at taking turns!),  and although it's a pain to have the kids on two different teams, at least M gets to participate :).

Here's hoping that our swim season goes well!

Wednesday, May 15, 2019

One of "Those" Weeks

"Mama said there'd be days like this," says the song...

Mama didn't say there'd sometimes be an entire WEEK "like this" !

It's been a rough one - P and E aren't feeling well, and we've been very stressed with the longer hours we generally put in at the end of the school year.

But there have been a few "extras" this week. Here's a bit of a rewind of this week's "highlights".

Last Wednesday morning, I was running late to drop M off because the main road to access M's school was unexpectedly closed due to a sink hole, and I had to detour quite a ways to get to his school. After finally getting him dropped off and settled, I came rushing into my school building (very LATE) and a little too quickly.

At the end of the hallway, I found myself floor-skating through something wet and gross.  After I (thankfully) stuck the landing and managed to keep my feet under my body, I looked at my colleague and asked hopefully....

"Did someone spill a smoothie?"

"Not even close," she chortled.

While I felt bad for the poor kiddo who had ridden the proverbial "Vomit Comet" all over the floor, I now had the remains of the barf brigade all over my shoes...and the smell was intense.  I immediately hopped to the girls' restroom on one foot and unlocked it - then faced a I take my shoes OFF to wash them, while standing sock-footed on the slightly wet, somewhat sticky, restroom floor...or do I stick my entire foot, shoe and all, into the sink?  I decided on the latter and did my best impersonation of Elasti-Girl, leaning over my foot, which was wedged in the sink, to turn on the water. Mentally cursing whomever decided that timed water faucets should only allow 3 seconds of water at a time (which isn't even enough time to wash HANDS!), I eventually got the job done.

The week went downhill from there.

I was hoping things would pick up over the weekend, and tried to over look school/work stress while looking forward to one of E's upcoming swim meets. He'd had a great experience at a long course meet not long ago, and was really excited about completing another long course meet.  E & I got up at 4:30AM Saturday to make the trek for the meet; this is not our favorite thing to do, but the meet was a couple hours away.  E had a good time swimming, and except for a couple of rude people we came across, things were going rather swimmingly :). E's good friend qualified for state championships, and E finished all of his races with great times. Since E wasn't able to get a meet t-shirt at our previous meet, I'd promised him that he could have one after the meet - and they even had his size.

But then - as we get home and unpack E's swim bag, we come to the realization that he left his good competition swimsuit in a locker room 2 hours away. Before I started fussing at him, I sent a message out to our team about the missing suit, hoping someone had seen it (of course, no one had). I then was hopeful we'd see it the next day, when we returned to the same location for the last day of the meet.  So, I let it go...and we got up again the next morning at 4:30 AM to drive to the meet. Driving down to the meet, things were looking up. I have my good playlist rocking and a nice cold thermos of unsweetened tea, and we were making great time...until I hear my phone start to "ding" a few times. Because it was so early in the morning, I knew it was the swim team, as P would have simply called me, so I pulled over at the next highway exit to park and check the messages. I'm glad I didn't ignore it...because after getting up early and driving 3/4 of the way to the was canceled. Apparently, there was storm damage from  the night before that couldn't be repaired to start the meet. So, we turned around and drove the hour and a half home.  Oh, and then we hear that no one has seen E's swimsuit at the meet best guess is that it has disappeared into a new dimension of space and time. E's theory is slightly more elaborate and involves space aliens stealing the TARDIS from Dr. Who and appearing, unseen by any mortal, they stole his used swimsuit off of the locker room bench. The best part of this is that it was Mother's Day. At least I got to nap when I got home!!

Next, I discovered that I now have a poison ivy allergy.

My entire life, I've been unaffected by the vines, always giggling a bit about my quirky ability to avoid a rash around the sneaky "leaflets of three."  In fact, my family nominated me "poison ivy removal person" and I've been removing poison ivy from our backyard for years with no issues (though always taking a few precautions, like wearing gloves, just in case). These days are over now.  This time, when I accidentally brushed my wrist with the poison ivy as I was pulling it out, I simply thought nonchalantly that I just needed to make sure I washed it well.


A few days later, I broke out in 4 bumps where it touched me. I was still fairly nonchalant, thinking that it didn't even itch that bad, especially compared to other horrifying forms of nature, like chiggers.

A few more days more, and it was perfectly clear that my days of poison ivy invincibility were over. The poison ivy rash began to spread up one arm and down the other while I was at work one the end of the day, I was swelling, had deep red/purple skin up both arms...and the rash made it to my face, near my eyes.  Since I like being able to see (and because my face looked awful), I slunk away to urgent care for help.  While I dislike steroid shots (who doesn't?!), the one they gave me really did bring down the swelling and redness, and the prescribed anti-tich medicine worked much better than the OTC stuff I'd been using.

Even this week just wouldn't be so bad though, even with the additional of all the year-end, state mandated school testing (yuk!) if it we hadn't had a big disagreement with a good friend.

See, P and I have been looking for help to tear down/rebuild a barn. We'd looked everywhere for an affordable option, and narrowed our choices down to a few...eventually deciding to use a friend's company. Unfortunately, the old advice to not do business with a friend rings very true here. Things have not gone well (multiple miscommunications and "reschedulings" for 8 solid weeks). After one particular incident, in which our friend realized that he forgot to add in the cost for doors on the barn (even though the project's cost was already estimated to be getting out of hand), we ended up putting a stop to the entire process (thankfully, before any work even got started, due to all of the delays). In the end, I just wasn't comfortable with a contractor that repeatedly encouraged me not to worry about pulling county permits for the work - nor was I comfortable with the fact that he conveniently kept "forgetting" to calculate in items we needed (like doors) in the estimate of cost, or that "he'd see about getting some of our money back, but there's no telling if or when he could" or that he preferred to work with "people who didn't have a ceiling in their budget."  We are still hoping we haven't lost a good friendship over this, but we know that's a possibility.

Then, we had another disagreement with a friend about the possibility of M swimming on a summer league (more about this in another post).

What a week! We know we will face stressful times occasionally, and while it isn't fun, it definitely helps to be able to laugh at ourselves and see humor or good anywhere and everywhere that we can.  The best part is learning from mistakes and trying to do better next time. It was a rough week...but next week will be better!